I have learned many medical terms in five years with hospice. Many times the nurses would see my puzzled look during Inter-Disciplinary Group meetings and would tell me what words like dyspnea and hypovolemia (shortness of breath and reduction of blood or fluids) meant. In the service to people coming onto hospice, there are multiple questions concerning the patient's past medical history and certain standards which must be met before admission. There is always a sadness for us if they do not met those standards because it is also obvious they need help and there is nothing we can do because of Medicare.
The disease of Amyotrophic Lateral Sclerosis (ALS) is no different and the Glad Notes our nurses use are three pages of in-depth standards which the patient must meet. I have had two people within my extended family who both suffered from this terrible disease. One of them, Pop, was like my father after my dad passed away. When Vicki and I asked Pop and Granny to substitute for my parents at our wedding, they lovingly agreed to the part. Pop took his role very seriously because on the eve of our wedding, at forty-three years of age, Pop began to give me a father to son talk about marriage. One of his wise proverbs was to never complain or offer assistance about my wife's cooking. He said to eat everything she makes with a smile. The second proverb dealt with having an argument with my beloved. He told me he and Granny had never had a fight. I told him he was either a saint of the world's biggest liar. He never told me how he did it, but after his death from ALS, I told that story at the graveside committal. The audience laughed but Granny told me later it was true. Whenever she was ready for a fight, Pop left the area until she calmed down. I sure wish he had said that part fifteen years earlier.
It took two years of Pop having unknown symptoms before I got the call from Granny, "Steve, Pop has ALS!" I heard the fear and uncertainty in her voice. You see Granny and Pop dated only 26 days before they got married and now over sixty years of marriage faced a certain and final conclusion. I asked Granny if they had suggested hospice and she said they would be coming in soon. Over the next several months I could hear the decline in Pop's voice. However, his Tennessee humor never faded. When I got the final call, I wept and cursed the disease which took away my Pop.
Today, as I write this blog, there are tears in my eyes for Pop and all the Pops, Toms, Gregs (Vicki's uncle) and others who are affected by this disease. But the fight and research against this disease which has affected me personally needs your financial support. Please give. Just $2 is all we are asking. Thanks.
